The Family

The Family
For Christmas 2010

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Thursday, November 11, 2010

Lumbar Puncture #2

Since Nathan's head size was kind of getting out of control, especially the strange bulge, we decided he needed another Lumbar Puncture (LP) to try and "jump start" the Third Ventriculostomy into draining better again.

For a more thorough review on Lumbar Punctures, you can re-read this blog post.

It had only been about a month since Nathan's last LP, which is not really a lot of time in the big scheme of things.  So there were pros and cons to doing it again, especially doing it again so soon.

The good news was that the last one worked so well to stimulate the drainage in Nathan's head, that there was actually quite a visible difference in the before and after head sizes.  So we were very optimistic that another LP would have the same 'magical' effect.

The bad news was that Lumbar Punctures can be very painful.  And Nathan had been through so much already, that we were really hesitant to subject him to any more painful procedures.

But on the other hand, was an LP every month better than going through shunt after shunt after shunt that didn't work?  Especially when there was so much uncertainty surrounding what we would do if the Third Ventriculostomy failed and they had to put in another shunt.

So we called to scheduled an appointment with our neurosurgeon, but it just so happened that he was in Africa on a medical teaching tour.  We knew ahead of time that he would be gone, so he arranged for us to be seen by one of his partners if we needed anything while he was away.

Unfortunately, when you see a doctor who is not your regular doctor, the experience isn't always quite as smooth as you'd like or hope it would be.  I think we were expecting to roll in, get the LP, and roll out.  But, as is probably likely with any new doctor, we had to explain what was going on with Nathan and why we were there.  And when we brought up the Lumbar Puncture, it seemed like we sensed a little bit of incredulity like "Why the heck would you want to have your kid get a lumbar puncture?"

I feel like we had to almost pull teeth to try and get him to listen to us.  Finally, he had the resident go and read Nathan's file to see what Dr. Riva-Cambrin had said.  Fortunately, he had left a note in Nathan's file that said basically "Try a Lumbar Puncture to see if that will kick-start the Third Ventriculostomy."

With that, he was now willing to go ahead with the LP.  In hind sight, it's easy to understand his hesitance to go ahead with the LP, but in the moment it was very, very frustrating to feel like we weren't being listened to.

I think in general, that one of -- if not THE -- most frustrating part of dealing with health care professionals is that they often THINK that they KNOW more about the health of your child than you do.  Now granted, they do know more about health and medicine than I do, but I know my child better than they do.  And it can often be so hard to find a middle ground starting point without some type of frustration, mild or severe.  But I digress...for now.

Anyway, in case I haven't mentioned this before, I hate seeing my boy in pain or distress.  It hurts me and dang near breaks my heart.  And I know that the LP is very uncomfortable and can be very painful, especially to a 10-month old baby!  So I politely excused myself and went and hid in the farthest corner of the waiting room.

Meanwhile, Bekah stayed in the exam room with him and sang to him and tried to do the best she could to comfort him.  She's good like that.  And Nathan has always found her singing comforting and calming, too.

I on the other hand thought that I could hear Nathan crying all the way across the waiting room and down the hall.  I don't know if I actually could, but in my mind it was as sure as anything.

After a few minutes, the nurse came out and motioned to me that it was now safe to go back inside.  When I got back inside, it was very apparent that Nathan had been crying.  So maybe I wasn't imagining it after all!  At this point though, he was mostly whimpering instead if crying.  Bekah had already put him back in the car seat carrier, and he just looked so sad.  So I took his little hand in mine and asked him if he was ready to go home.  And in a very whiny and pathetic voice, but very, very clearly, Nathan said: "Yeeeaaaah!"

And so we did.

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